Bone Mets Thread
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Myra, have you checked into the Xeloda thread? Lots of help there. It has its aggravations just like any other tx, but it's been a good tx for me so I try not to cuss at it too much. Got me on the dance floor with NED after several years. I bet it will be friendly to you as well!
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Hello all,
I've been lurking for the last few weeks, since I got back from vacation, but reading and praying for all of you. I think what is most remarkable is the capacity each of you have to offer care, support, and information to others, even from the place of your own pain and suffering. It certainly speaks to your resiliency and gives me so much hope not just for us, but for humanity overall.
I hit a low point recently. I think since being disgnosed in August, I've been mostly focused on rising to the challenge of chemo and all its nasty side effects. Now that I've adjusted to that, the big picture is creeping in. My kids asked me the other day what I want to be called when I'm a grandmother. I'm just trying with all I have to get a few more years with them. I feel like if I started crying, I would cry for days. I know I need to do that at some point, but instead I'm moving forward. Parent/teacher conferences last night and hosting an 11-year-old birthday party for my daughter Sunday.
Cristina, I think if we met in the middle it would be about an hour for each of us. Maybe something we can do with the kids after the holidays?
I hope everyone's weekend brings even just a small moment of unexpected happiness. Here's a picture from Thanksgiving pie baking. My happy small moment.
Rachel
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Jazzy at the risk of jinxing my situation I have to say I have no bone mets pain at all. I apparently have a met on one rib and my C2. So I keep waiting for my neck to break I feel like a time bomb sometimes, but so far so good. I take a crap load of supplements like so many others and I refused the oncologist suggested bone strengthening drug because of the scary side effects. I go every morning to the gym do half an hour of cardio (hard). I was told by a naturepath that this is good for the lymphatic system and for getting the medication all through the body. Then I do weights for half an hour to an hour depending how energetic I feel. My oncologist told me not to lift more than twenty pounds but I do. Am trying to build some muscle so I do it carefully and slowly. I have pretty bad arthritis in my knees and the tamoxifen doesn't really help matters there but the marajuana oil helps with that. So I figure I will keep moving as long as I can.😉
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Hi AmyQ,
The tone of your post says it all!! You have clearly been through the Mill and I hear your sadness, frustration and anger loud and clear. However, I am reminded of that old saying "in for a penny in for a pound" and would recommend that you get the colonoscopy. It is not the most unpleasant procedure in the world and you will be sedated. The colonoscopy will give you peace of mind either way as not having it done will ultimately play on your mind. xx
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Bluefrog your children are adorable that looks like a blast and probably a good mess to clean up afterwards eh? My children are my strength I look at them and they give me reasons to keep fighting. You are just recently diagnosed it will get easier. Been six months for me now and I don't have my crying jags nearly as much anymore. I keep telling myself it won't change anything if I lay here and cry all day other than I will have a real shitty day. Tell your kids granny works or Oma I like that one. Everyday new things are being discovered regarding this disease so have hope that a cure will be found. They have aids under control now and with this new break through on prostrate cancer things are definitely happening.😊
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Hi Bluefrog,
Agree with Wendy3 Your kids are gorgeous. Things do get better (believe it or not) and being/living in the now and not thinking ahead is how I cope. My children and family make me want to be around for a long time and I only think positive thoughts, no use worrying about tomorrow until we see what it brings, so just enjoy today. I have said this in different threads but seriously "Tomorrow is Promised to No One". Stay strong be positive and laugh at every opportunity.
xx
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3Holly, After I have a scan, I have 2 techs, stand on either side of the table and reach out with their arms. I grab one with my right arm and one with my left arm and they slowly pull me up. My radiology nurse showed the techs how she wanted it done and voila! It works great with little to no pressure on my spine.
Rachel, the smiles on their faces is precious.
Gotta run....scans and lab and onc visit...I'll touch base later. Good Friday to all.
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Amy so sorry you are feeling down, decisions as your future testing are for sure personal, but keep in mind, they do have alternatives to treat you, your doc didn't give up, so maybe if you do have the colonoscopy and you get a clear result you will feel you did it all, and if there is a prob if it's early they could really help. But knowing everyone here we will support your very private decision. Counting down the rads!!
3Holly, I had shingles the pain was radiating down my arm, I knew it was not good, I was put on Xovirax, pretty much the same as LindaE, you know they say it could come from stress...
Hey wild ladies Dee and Dune, does it count if I had a mini one at 16?
Rachel absolutely the best of times. Your daughter, looks so much like my granddaughter they could like sistas or twins. She is a bit younger. They give her strength and THAT is the ultimate why she puts up with so much, like Wendy said.
Lynne about your doc giving you real human touch, how wonderful, all docs should be half decent like her.
Judo love your saying, I keep putting these things up around the house, maybe I need constant reminders. I love the one I posted. It says it all.
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Good morning all!
Love all the pics here! Keep them coming.
Amy - give yourself some time to think about the colonoscopy - too much on your plate right to think about that. The preparation is the worst part and the test itself is so quick and you would be well sedated. I know what you mean about other testing. When my heart went out of whack in my recent hospitalization, the doc asked if I sometimes have chest pain, I do but not when walking up the stairs, don't know if it's anxiety. Anyway, she proposed testing on a treadmill and I refused and I said no. Then it will trigger pain all over and I've had it. She agreed with me.
3Holly - glad the anti-viral is doing its job on you, it seems to work for me as well!
Patty - hope you get home today and mostly, I hope this is your last hospital stay.
Myra - glad to hear (shame on me!!!) sh*t happens to everybody!
Lindalou - thinking about you today and wishing you good results!
Wendy - WOW on your exercise routine. You rock girl.
Sending little bundles of joy and smiles and small happy simple moments to all.
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Hello ladies,
I had a revelation yesterday...I'm more likely to suffer a significant "event" (like a heart attack) related to dealing with insurance companies than I am to having things end badly due to MBC...are high adrenaline levels good for us?
Sending hugs to those who are struggling with pain and loss this week. It's like being on a scary ride, it would be nice to get off and catch a breath!
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Hi Saucychiq,
One month in on the hormone therapy and no hair loss yet. I'm taking some biotin, just in case. I'll keep you posted if it starts.
The SEs haven't been too bad with this so far. I take it at dinner since I get more hot flashes in the few hours right after. By morning I almost feel normal (a little fuzzy, but if I get busy it's possible to work through it.) Hope it goes well for you, too!!
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Lindalou, good luck today at the hospital, and thank you everyone for the advice on getting up from the rad table. I like your idea, Lindalous, of being lifted slowly from the sides since pulling from the front is what killed me, so I will ask for the slow pull from the sides, but I feel bad that these nurses need to lift me (5-10 or 11, 140 pounds) - not easy, I think they need some strong men helping.
Patti, so glad you got to spend time with your son. I have 2 boys also, they are so sweet.
Trying to get out to lunch today with friends, will pop a few pills and hopefully make it there. Everyone have a great day!
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3Holly: when I needed lots of scans and had two spinal compression fractures, I found it was easiest for me to roll onto my stomach with a little assistance, slide over so my feet were on the floor and use my arms to slowly push myself up. Just another option to consider. More then anything, don't let anyone make you feel rushed. Best of luck.
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Jazzyjune
Thought I would pop in to say, I have been worried about the grym and bobe mets as well. This summer I completed. a 3 month livestrong program at local Ymca. I loved it and trainers helped me be careful.
Hi to all. Still recovering energy from very fun Thanksgiving trip. Holding you all close.
Mary
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Morning everyone!
Bluefrog, such a cute picture! Adorable, but I'll bet a mess to clean up, but your kids are worth it.
Dune, this is for you!
Running for the ferry, infusion day, Have a good day everyone, Cheers, Dee
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Bluefrog, your kids are adorable. Enjoy them to the fullest!!
To all with motorcycles, I have always been scared of them. In Florida riding anything on 2 wheels is very dangerous.
Have a great weekend all. Myra.
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Thanks Wendy for the info. I'll just have to give the elliptical a try and see how it goes. A few months ago I fell on my caboose and jammed up my spine so that I had to start wearing the back brace again. I had an MRI, but it showed no fractures or anything. Then about two weeks ago I sneezed really hard and my back popped and for a moment I was afraid of what had happened to my spine, then I took a breath and realized my back felt soooo much better, and I haven't worn the brace since. Yeah! Those things are so bulky, hot & sweaty.
I also take a handful of supplements daily. Making sure they're chemical free and non-GMO.
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Thank you Momall, I am like you where facts and research help me cope and learn more about the disease. I am having good days and bad days dealing with it all and then I feel guilty about having a good day or treating her normally. Although I expect she'd want to be treated normal and not to talk about it 24/7 and that I am living my life. It is very sad for me to think she may not be around someday if and when I get married or if I have kids. Your daughter is very lucky to have you every step of the way.
Patty, I am so sorry you were so young at the original dx and for the issues you have been having recently. I want to badly to get checked out and know my doctor is a bit more old fashioned and wants to wait. However, with news that my mom has the BRCA2, I'd hope some doctor would see that I am at a high risk and test me now (I'm 28) before I can get better insurance to start the genetic testing. If I had my way, I'd get these girls removed tomorrow. I hope for some days ahead where you feel your age (or younger!)
GG27 - thank you for your advice. She said she felt pretty good after the first infusion and her medication for the pain is helping alot. Although after a few requests, she is clearly not willing to share details of the size of the tumors, grades, nodes, etc. I am pretty sure something happened at an appointment and the doctor's original optimism about being able to treat it for 'many' years is no longer the case.
50sgrl - I am happy you are getting in the holiday spirit. Hope you picked out an awesome tree with the grandkids. Thank you for your advice regarding the zometa. Not sure how long the infusion takes but I'll ask her - hopefully they have her on a long IV.
Milaandra - no idea if she is on an AI inhibitor. She did say that she has to take a leave from work and stay home as she is a lot of risk currently of breaking a bone. She is already losing weight and I hope that with some good meals, I can fatten her up, especially if she may face a lot of nausea in the days to come.
Jazzy - I have an elliptical and love it. Even if you go slow and are basically walking on the machine to start - it has very little impact on your joints and might be good for you. Of course, take it slow!
For everyone I've missed - hoping this cold rainy weather isn't hitting your way and I hope you have a lot of family to surround yourself with in the upcoming holidays!
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Hi all
Just a quick note to say I'm alive and well and doing a lot of business travel. Three days this week, four next week, so I'm yonks behind. Don't have the brain power to respond to everyone, but...
LindaE - glad you're ok! How scary!
Amy -I'd postpone but get it done at some point.
Rad table - I'd roll to my slide and not let them yank me up. Similar to what Mil said.
Love the motorcycles!
Dune - your grandson is adorable! Glad you go to go out with him for a bit and hope you get over the cough soon.
Patty -hope the wbc is up and you're headed home today.
Bluefrog - adorable children and what fun they are having!
Iwrite - loved the pot story; got some illegal pot for my mom when she was fading and had to pretend I didn't know what to do with it.
It did help her. Your story made me laugh! And hope you don't have a heart attack - totally relate although don't have that issue now that I'm in NZ.Lynne - I think I can be obnoxious enough to speak for all of us - please don't hesitate to share about your DH; that's part of life here on the BC boards. So sorry you're going through his cancer and your own. Really sucks.
Lulubee and Judo - love your posts.
Dee - great picture!
Hugs and love to all...have to go to the farm store and buy chicken feed. New experience!
Terre
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Terre, I'm now picturing the episode in which Lucy and Ethel decided to raise chickens! You have an interesting life :-)
I figure getting regular ct scans means I don't have to get any other screenings. Delusional? Perhaps, but that's my excuse and I'm sticking to it! :-D Besides, what are the chances?
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Dunesleeper, I hadn't heard of that series so I had to look it up! The scenery in the highlands is spectacular. My favourite is a breathtaking stretch on the way to Eilean Donan Castle. This weekend though, we're quite far south in England for a Dickens Christmas Fair
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Oh DeAr this thread got so far ahead of me.
Myra- I thought of you having bone biopsy all day and it didn't happen!!
I went to MO today. TM were up 15. 45 to 60
I get ct scan on the 16th to see if Ibrance is helping at all. He already mentioned Xeloda to me but I go to Dana on 1/7 and will let them decide treatment of there is progression. I finished up 10 rads to run and femur and have 3 more left to pelvis. I feel beat up. Have a great weekend. I pray for each and everyone of you.
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Dee, you look fabulous and good to see you out on the motorcycle!
Terre, send us pictures soon of your new house and chickens etc.
Loves, rest up this weekend and try to let your body recoup a bit. Rads can be fatiguing.
Had CT and Bone scan today. No more Xgeva for me ever. Onc said he has never had a patient who had the adverse reaction I did. No Faslodex either today. He wants me off everything until January to give my body a rest. Myra, you were off a length of time too correct? New possible rib met but team is conferring. Most likely will have IMRT for just a few sessions, but this is the one with the molded mask of my face and chest. Then during the radiation session, after it has been placed on you, it is clamped down to the table so you can't possibly move. They cut out places for your eyes, but it is confining and weird being clamped down. Never the less it is so very precise so that's good. Tumors in spine and lumbar progressing but slowly. No more radiation there either as I have had the most I can have. So all in all a good report for me.
Weather is very miild here for December. No snow so I can walk a bit every day. Best to all for a good weekend and recovery for those who need it. Hugs to all....
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Carol thx for thinking about me. Tried to reschedule today, seems MD is in bad shape. Will try again Monday.
Lindalou, no I was never off treatment for a while. One week at most. Perhaps you are thinking of Hope. BTW, anyone hear from her.
Happy weekend to all. Myra.
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Myra - Dee posted on another thread that she had seen Hope on her Facebook recently and looked healthy. Hopefully biopsy on Monday!
Loves - almost done! Hang in there.
Lindalou - quite a day for you. Seems like quite an equipment you have there. Hope you hear from your team soon.
Good week-end to all!
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Lindalou, do you mind describing the reaction you had to Xgeva? I can't take it anymore, either, so I'm really curious.
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Lindalou, I had the molded mask for my last rads, and the rads were very effective for my upper back. They did not keep the mask on long at all, so there was really no discomfort. I hope you have similar results and that the break helps promote healing.
LindaE, I am so happy to hear that about Hope doing well, she has been on my mind a lot.
Bluefrog, Thank you for the advice, but I will never try to lie on my stomach again since the last time I tried it I had excruciating pain like I never felt in my life. I think I will ask them to lift me from the sides, first working myself up a little on the elbows (sort of hard on the narrow table but hopefully they will be patient). Great pic of your kids - I'm sure they will give you the strength and optimism to help you through this.
Couldn't sleep at all last night, and it wasn't due to pain this time, not sure if it's the steroid they put me on for upcoming rads next week (I think a side effect might be insomnia or jitteriness) or whether it's from worrying about my mom in the hospital.
Hope everyone has a good weekend and can soon enjoy some holiday festivities with family and friends, and have a few laughs - finding that laughter really can sometimes be the best medicine of all.
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3Holly - I'm also on steroids from my reaction (finishing today), definitely jitteriness me too. Part of the SEs.
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lulubee, I will PM you about Xgeva.
LindaE and 3Holly, Steroids do the same thing to me. Wired and jittery and insomnia. Hope you both feel better soon.
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Darn I've been looking forward to hearing about the odd reactions to xgeva so I could keep that in. I d. It sounds like you were both on it awhile before it developed?
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